Energy in Action by MitoAction

ENERGY IN ACTION - EPISODE 110 MitoArtisian’s   Welcome back to our fellow mito warrior, Christine Knox, who's here to talk about a new program she's implementing for MitoAction.    EPISODE HIGHLIGHTS   Can you tell us about the program you've started and what inspired it? I've noticed a lot of programs offered to the mito community are fundraising efforts geared towards people who are sports mind...

ENERGY IN ACTION - EPISODE 109 Breath Taking   Jessica Fein is the author of Breath Taking: A Memoir of Family, Dreams, and Broken Genes. She's also an essayist, and advocate, a speaker and the host of the I Don't Know How You Do It podcast, which features guests who triumph over seemingly impossible challenges. Jessica is a working mom of three children and she's a relentless warrior in the memor...

ENERGY IN ACTION - EPISODE 108 At College with Mitochondrial Disease   College can be a challenging and overwhelming experience for any student, but the complexities of mito disease makes college even more challenging. Natalie, Alex and Annie are all college students and they join me, along with the Mito Action CEO, Kira Mann, to talk about their experience and how Mito Action can be helpful to st...

ENERGY IN ACTION - EPISODE 107 Mo's Personal Journey   Mo has Maternally Inherited Diabetes and Deafness (MIDD), caused by a mutation in his mitochondrial DNA. Mo is married, in his 30's with two children and he joins me to tell his story and to share his diagnostic journey.   EPISODE HIGHLIGHTS   Where did your diagnostic journey begin? I first noticed that I was struggling to hear about the age...

ENERGY IN ACTION - EPISODE 106 Angel Flight New England   Kirk Walters and Larry Camerlin of Angel Flight New England are here to share about the organization, how they can assist patients who need to travel for medical care and the other resources they assist with.   EPISODE HIGHLIGHTS   What is Angel Flight New England's mission? We are a nonprofit organization with a mission of flying people, f...

ENERGY IN ACTION - EPISODE 105 Medical Marijuana for Mitochondrial Disease   Dr. Fran Kendall is a Clinical Biochemical Geneticist and Founder of VMP Genetics. She is also an Adjunct Assistant Professor at the University of Georgia and authored the book Shades of Grief: Echoes of Hope from the Darkness . Dr. Kendall shares her insight and knowledge on the topic of medical marijuana and how it can...

ENERGY IN ACTION - EPISODE 104 Courageous Parents Network   Blyth Lord and Liz Morris join me from the Courageous Parents Network, an organization that offers a lot of resources for parents and caretakers, from diagnosis to losing a child and every stage in between— it's like a warm hug!   EPISODE HIGHLIGHTS What is Courageous Parents Network (CPN)? Courageous Parents Network is a national non-pro...

ENERGY IN ACTION - EPISODE 078 Marcy Young - Living with CPEO   Marcie Young is a young adult who is impacted by CPEO and lives near Cleveland, Ohio.    EPISODE HIGHLIGHTS   Can you share about your diagnosis journey? My whole life, my mom seemed off and it continued to get worse as I got older. She was diagnosed with muscular dystrophy, but I felt like more digging needed to be done. When I gradu...

ENERGY IN ACTION - EPISODE 103 Self Care for YOU   Author of After the Shock and International Resilience and Crisis Recovery Speaker, Becky Sansbury, has provided so much support for the rare disease community. She joins the podcast to share her best self-care advice with our listeners.    EPISODE HIGHLIGHTS   What inspired the work you do? Decades ago I was affected by a family crisis and realiz...

ENERGY IN ACTION - EPISODE 102 Advocate for YOU   Jen Owen is a mito patient and mito mom, joining me to share her personal journey having mito, about her diagnosis journey, her family and how to best advocate for yourself when you're affected by health issues.      EPISODE HIGHLIGHTS   Can you share about your mitochondrial disease journey? I experienced 15 years or more of misdiagnosis of more f...

ENERGY IN ACTION - EPISODE 101 The Passionate Life of Josie   Josie van Londen suffers from two interlinked mitochondrial conditions she was diagnosed with as an adult, at the height of her career as an oncologist. Despite her diagnosis and the changes she had to make in her life and career, Josie continues to create meaning in her life in the way she knows best— helping those living and beating c...

ENERGY IN ACTION - EPISODE 100 LHON Collective   Lissa Poincenoit and Malinda Marsh are the co-founders of the LHON Collective, created to make the diagnostic and treatment process easier for patients and connect them with supportive communities. They are also both mothers to children living with Leber Hereditary Optic Neuropathy (LHON).   EPISODE HIGHLIGHTS   What is LHON? Leber Hereditary Optic...

ENERGY IN ACTION - EPISODE 099 Mito Quilts of Hope   Christine Knox is a mito patient and the founder of the Mito Quilts of Hope project.    EPISODE HIGHLIGHTS   How were you introduced to the mito community? My parents noticed when I was young that I would fall asleep anywhere, I didn't gain weight easily and I didn't have the same level of energy as other kids. It wasn't until I was an adult tha...

ENERGY IN ACTION - EPISODE 098 Introducing Positively Walking with Mito Podcast   Jenevieve Woods and Alexandra Salser join me to share their stories and share about a special positivity project they're doing for the benefit of the mito community.    EPISODE HIGHLIGHTS   Jenevieve, can you tell us about yourself? I have mitochondrial neuropathy ATP deletion with symptoms such as muscle weakness, n...

ENERGY IN ACTION - EPISODE 097 Champs Foundation   Elizabeth Reynolds is a mom of three children and her oldest, William, has Pearson syndrome, a multi-system disease caused by a deletion in mitochondrial DNA. She is also the Founder of The Champ Foundation, which supports research toward better treatment and a cure for single large-scale mitochondrial deletion syndromes (SLSMDS), like Pearson syn...

ENERGY IN ACTION - EPISODE 096 Employed with Mito Disease   Bill, Tasia and Nina are all mito warriors navigating employment despite the challenges of the disease. We're having a discussion of how they adjust their work lives to ensure they're not pushing themselves beyond their limits and also caring for themselves.      EPISODE HIGHLIGHTS   Tasia, can you tell us about yourself and the work you...

ENERGY IN ACTION - EPISODE 094 Barth Syndrome - When the Lack of Fair, Equitable and Appropriate Regulatory Review Process Jeopardizes Ultra-Rare Drug Development   Barth Syndrome Foundation Executive Director Emily Milligan, and Director of Family Services & Advocacy, Shelley Bowen join me for a discussion about the latest news surrounding the foundation’s treatment efforts and the families a...

ENERGY IN ACTION - EPISODE 093 Navigating School for Our Kiddos   Beth Folcher is a parent and teacher. She joins us to kick off the school year with tips for parents of children with mitochondrial conditions so that we can be the best-informed advocates for our children.    EPISODE HIGHLIGHTS   Can you tell us about your son and your experience with rare disease? My son was born in 2005 and was f...

  PARENTS AS RARE - EPISODE 092 Patient Stories from the FAOD Community - Live from the IMC   I encouraged the FAOD community attending the 2023 Metobolic Conference in Denver, CO to share their stories with me. This is a special, live-recorded episode that features patient stories that paint a beautiful picture of what their journeys have been like and the importance of community.   EPISODE HIGHL...

ENERGY IN ACTION - EPISODE 091 Hailee The Mito Warrior   Hailee is the Ultimate Mito Warrior. She has such a positive attitude, despite the challenges she experiences on a daily basis. She works to create awareness of her mitochondrial disease, and secondary conditions she endures through her videos on YouTube.   EPISODE HIGHLIGHTS   Can you share about your particular mitochondrial disease and yo...

ENERGY IN ACTION - EPISODE 090 Jeremiah Gracen TK2D Warrior   Aneesa is the mom to Jeremiah, a beautiful, wonderful and special boy within our mitochondrial community. Aneesa shares her and Jeremiah's story to inspire others in the community.   EPISODE HIGHLIGHTS   Can you share about Jeremiah's disease and diagnosis journey? Jeremiah has thymidine kinase 2 deficiency (TK2D), categorized under the...

ENERGY IN ACTION - EPISODE 090 Akron Children’s Hospital Mito Clinic Research Update   I'm joined by Dr. Bruce Cohen, Dr. Matthew Ginsberg and Clinical Research Coordinator, Ashley Erdesky— all part of the clinical and research team at the Akron Children's Hospital Mitochondrial Center.    EPISODE HIGHLIGHTS   How does a patient discover if they qualify to participate in a clinical trial and how d...

  PARENTS AS RARE - EPISODE 089 Grandparents As Rare: Find Your Bike, With Karen Richtman   Karen Richtman shares her patient story, shining light on her journey and her connection to Fatty Acid Oxidation Disorder (FAOD). In addition to being a parent as rare, she is also a grandparent as rare, and she has some wonderful aspirations for future support and advocacy.    Life is like riding a bike. B...

ENERGY IN ACTION - EPISODE 088 Exercise for Mitochondrial Patients   Dr. Nicole Voet joins us from the Rehabilitation Department of Radboud University Medical Center in the Netherlands. We will discuss the importance of exercise for mitochondrial patients and what is best for our community based on her knowledge, experience and research.    EPISODE HIGHLIGHTS   What is your advice for someone with...